Top Tweets for #JenBreaDoesNotRepresentME
@MECFSNews @MarilynGavrano5 Obviously a case of ME misdiagnosis. I doubt if the diagnosing physician used the ICC. We will see a lot more of this with SEID criteria the CDC will be using to train doctors.
#meactiondoesnotrepresentME
#jenbreadoesnotrepresentME
#pwme
I am not sure if I am more mad or sad at those who have ME and are blindly following Jen Brea and ME Action. Probably more mad because they are dragging the rest of us over the same cliff.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
"So, MEAction would not sign nor endorse ME-ICC petition, yet they gladly created a curriculum for an accredited continuing education course for medical professionals using IOM/SEID!" - https://t.co/aDcPbUWfB3
Yet this is the criteria which Jen Brea promotes.
#jenbreadoesnotrepresentME
A sleep disorder study at Emory University found 21% of patients with hypersomnolence had "comorbid SEID." These patients' "SEID" is likely to vanish once their daytime sleepiness is effectively treated. Expect sleepy SEID patient photos. https://t.co/cW8YoPHAUE
What MEAction is proposing to do is deceitful and unconscionable. Doctors need to be educated how to make the diagnosis of ME, rather than dumping people with ME into the wastebasket diagnosis SEID. Doctor education needs to be based on the ICC and IC Primer, not the IOM report.
@MarilynGavrano5 @Wee_Bawbee @AliceOutThere @TinyWriterLaura @AnneSpaceCoast @stevieboebi @MEflattened @jenbrea @GabbyKlein1 @velogubbed @jemb123 Correct, Marilyn. MEAction is "educating" med pros w/ SEID criteria but calling the disease ME. And SEID is a vague definition - it is not ME as defined by our experts' ICC. @MEActNet r playing a dangerous word game. And it will adversely effect millions of patient's lives. ๐
Like a putrid bacteria it spreads and festers.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
Brea caught again lying. Really, her claims are so bizarre that it seems that she can not judge what is real or not.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
#pwme
@jenbrea @LivingSmallCA @MEActNet @meactionscot No - thatโs false and @jenbrea is attempting to deceive the community. The material prepared by @MEActNet for the med Ed course uses only the SEID criteria!! At the end they link to other defs but they r only teaching the IOM criteria. #StopLying
@GabbyKlein1 @twitchyspoonie @rebshloima @d3mrs21 @KCSteckel @jenbrea @Diwi9_ME @richardvallee @exceedhergrasp1 @TurnItUp4ME @ME_weaselFyta She didnโt exactly appoint herself, sheโs also been โgivenโ this authority on strength of her film. It works two ways. But problem IMO is sheโs now representing a rainbow of conditions &embracing a wider fight. ME is such a unique political struggle, it needs focus, not dilution.
Advocacy orgs for M.E. #MyalgicEncephalomyelitis #MyalgicE especially newer orgs, shd listen to & cooperate w orgs that hv decades of experience. Newer orgs: be honest about your history of dismissing valid info & concerns re : disease criteria, patients' preferences, etc.. #pwme
@velogubbed @TurnItUp4ME @jenbrea @MEwarrior_au @BettineM @CarolDa42444571 @unrestfilm There have been multiple communications with @jenbrea & @MEActNet but they repeatedly ignore the voice of independent advocates and the org MEAdvocacy who advocate for ME-ICC. https://t.co/nefbWttaHZ
@TurnItUp4ME @jenbrea @MEwarrior_au @BettineM @CarolDa42444571 @unrestfilm My life was destroyed at 18 years old. I was young when ME punched into my life. We coped in a v different way then. No social media, no internet. Letters and phone calls. The camaraderie of internet is great but also enables โcelebrityโ status, and authority which is a chimera.
@jenbrea @MEwarrior_au @BettineM @CarolDa42444571 @unrestfilm False! You & I have met, had numerous in-depth conversations, communicated, etc. And I know others have, 2. Experienced advocates hv tried 2 no avail 2 educate u on history+politics+science (esp. case def issues) of #ME. This isn't about "point-scoring..." It's about truth.๐ฑ๐ป๐น
This has nothing to do with ME despite their propaganda. It is 'education' designed to bury PWME into the tomb they call SEID.
#jenbreadoesnotrepresentME
#meactiondoesnotrepresentME
Physicians, Nurses, Pharmacists, Social workers can receive 2 free CME credits by learning more about M.E., Myalgic Encephalomyelitis/CFS that is at epidemic levels in US, more common than Zika, Ebola, West Nile, Polio and ALS combโฆhttps://t.co/tabAiB4h9V https://t.co/gCEalwKG4X
@velogubbed @Diwi9_ME @twitchyspoonie @d3mrs21 @GabbyKlein1 @rebshloima @KCSteckel @jenbrea @richardvallee @exceedhergrasp1 @TurnItUp4ME @ME_weaselFyta Najim, this is a common experience of long term PWME. They all were disrespected and their experiences and suggestions ignored. Brea talks about being a team player but clearly it is the Brea show.
#JenBreaDoesNotRepresentME
@NeuroMEwarrrior @CatEye0611 @CDCgov @MEActNet Also why is @MEActNet UK suggesting that the IOM criteria be adopted by NICE? They have almost word for word used the SEID criteria in their submission to #NICE working group.
@TurnItUp4ME @GabbyKlein1 @docsimsim @Wee_Bawbee @NeuroMEwarrrior @CatEye0611 @CDCgov @MEActNet @MeAction @jenbrea This is a baaaad state of affairs.
๐ฃ World-wide DIS-information campaign.
โ> Hide + Seek of #MyalgicE
The Powers That Be
Do the *hiding* / burying.
โ๏ธ
๐ง Whilst #PwME
Seek true definition
+ bona fide treatment
Of
#MyalgicEncephalomyelitis โ๏ธ
@GabbyKlein1 @docsimsim @Wee_Bawbee @NeuroMEwarrrior @CatEye0611 @CDCgov @MEActNet @MeAction @jenbrea @MEActNet stated they intend 2 "educate" medical pros in UK + Australia with the HHS/IOM SEID criteria after they finish their US tour. Doctors all over the world will soon be further misinformed and muddying the waters. #SayGoodbye2ME ๐
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